“When Sonia started her colic, we feel persons with disabilities”

Blind Ivan and Lily by Ceranium in the hospital didn’t want to give the daughter, doubting that “parents with disabilities will be able to care for the child.” A year later after this story, the correspondent of “Pravmir” went to visit the family and learned how the couple has a daughter, what are the pros find lack of vision, why I do not like self-pity and what it’s like to come to Moscow from the Russian remote places, get an education, find a job, housing, and most importantly – each other. Today is the international day of the blind.

Lily with her daughter and husband. Photo: Sergey Shedrin

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Ivan saw the daughter and said, “Yes, it’s zucchini!”

Until August 2017 Ivan and Lily Serenely lived quietly, modestly and happily, like millions of other young families. Their only feature is the complete absence of both vision attracted attention is that the only people on the street, passengers in transit, in stores. Worked and prepared to become parents – awaited daughter.

And then the unpredictable happened: the hospital staff said that will not give by Ceranium baby Sophia, as “persons with disabilities will not be able to care for the child,” urged mother Lily “to take the child under his responsibility” and threatened guardianship. And even thought experiment: “If we put the child on the other side of the table, how will you find it?”, they said parents.

Then through the efforts of editor in chief of radio of the all-Russian society for the blind Ivan Onishchenko learned about the situation the journalists about Chernevich told dozens of publications and TV channels. Seven stood up Diana Gurtskaya and Anna Kuznetsova. All done – with a bouquet of roses Ivan met Lily and her daughter, “3,240 kilos and 51 cm of happiness” – so wrote it in VC.

Ivan with my daughter

Serenevy I hope that they and nobody else will have to prove that “disabled people can create a family and be parents.”

– Imagine, we were recently filmed by the TV station and the reporter asked: “Show me a video of you handy with a child!”. We are so joyous: “Now all show”, and start to wear Sonia pants…and at this point it’s got two legs, and they fall exactly at one side of the pants – laughing Lily.

Right how to order. “All clear here, it’s all clear,” jokes Ivan.

But if we had vision, we may never meet, continues Lily.

– And there would be Sony – adds Ivan. – You know, not in vision happiness. Life, she is what you make of it. Sonia-patison, come to us!

It turns out that when Ivan first saw Sonya, exclaimed: “Yes, it’s zucchini!”. Zucchini and squash – pumpkin family, so Sonja Patison. But to see and watch the blind are also able, not only through vision and tactile, and therefore Serenely always use these words in speech and advise others – so right.

Sonia, grunting, lifted from the Mat-puzzle with princesses and are not confident walking in a hurry to parents on the sofa. The game is “over bumps, over bumps! In the hole and wham!” she obviously likes the face – vosmikova smile.

– She still does not understand what “in the hole and wham,” says Lily, turning to her husband. – She does not believe that you can let her go.

I thought: I – a defect, and the rest is all good

The village of Nakhabino, where they live Serenely, with Moscow links loaded Volokolamsk highway and the railroad. By grey industrial zones, new residential areas with colored high-rises, a series of garages and dilapidated barracks, long colored fence with graffiti and furry green forest rushing train in the largest working village of Russia.

Serenevy trinadcatiletnie live in the gray house near the station. From the Windows of their kopeck piece shows a multi-tiered staircase leading to the ways of the market and shopping center, football field, Playground with slides for children and exercise equipment for adults. In my first apartment Ivan and Lily moved in a month before the birth of Sony.

– At first we were stunned by the ads, “the Sending to Moscow. Time such and such” or “Passenger so-and-so, take away papers,” smiles Lily.

Just when he came to see the apartment, apparently, was a break. And during the transfer and acceptance all turned out, – says Ivan. – Now I am used to, of course. And it’s kind of nice, you always know the schedule.

And when something about Moscow Ivan and Lily never dreamed and did not think that in this city, just like anywhere else you can meet so like you man.

Both were born in small towns, which are called “provincial Russia” Ivan in Glazov, the northernmost city of the Udmurt Republic, and Lily – to “milk” the town of Davlekanovo in Bashkiria depth.

Both were born sighted, but gradually the ability to see lost. Lily – the first class, having to read your own tale by Pushkin, Marshak and Chukovsky. Then she went to boarding school for the blind and visually impaired in the center of the region and Ufa. “Probably, it was terrible mom, and I felt so cool, I go somewhere. I didn’t have any complexes,” says Lily today.

Ivan studied at the normal school, but when he realized that no longer distinguishes the grass from the asphalt, and could not see where he had fled classmates, closed. However, from the special school in another city refused, but started to engage in further lessons in Braille.

– If I hadn’t hesitated, all would be well. Discrimination at school, the boys had probably a little to help. Suddenly they were afraid to offend me. But it seemed to me then that I was a defect, and the rest is all good. And I’ll be defective to establish relations with everyone? Parents then worked, had time to engage in the lessons, and not made in Soviet family some Frank communication with parents. Usually the parents are standing, and the child of such an employee. We hope that we will be different. I’m for friendly contact with the child to be aware of what is necessary to help, support, what’s in his head.

By the end of school and Ivan and Lily decide – I want to do next. By the time both graduated from music school: Lily on piano, Ivan – cello. Lily arrived in Ufa College of arts at the Department of music theory, and Ivan realized that he wanted to start life with a clean slate and went to the Kursk musical College of a specialized. He later admits that this community helped him – made friends and disappeared in the complexes. And Lily, with your neighbors artists rewritten until now.

It is true that fear of the white cane, they were released at once: in different cities they went to their schools and put, if you go without it.

– Thought about how I stick out, that I think about it, – says Lily. – In adolescence is important, especially for girls.

– For guys too, I’ll tell you, – connect Ivan.

– There is a stereotype that sticks only go elderly. And blind too, he is – continues to Lily. Especially when on the street some older woman comes over and says, “Oh, what do you do with a stick … so young!”

Or it happens: you go to work in the morning and I hear: “where are You going? In a hospital or at home?”

And this: “You in the Church or home?”

Yeah, temple, hospital, home – other options for disabled no.

All this time Sonia moved to Lily, then to Ivan, hugging them around the neck, sits on her knees and sticks his cheek to receive the warm kiss of the parent.

– Yes, you our quick zucchini! – Ivan laughs and picks up Sonja in his arms.

Classmates hinted: “Pay for Lily’s attention,” and he resisted

Met Ivan and Lily already before exams in Moscow – received musical sound engineering at the Russian state specialized Academy of arts. In the hallway in front of an audience Ivan with other students nervously leafed through the notes. “And suddenly some girl with an unusual voice calmly asks: “the test of the sound production takes place here?” “Yes” “Then I with you.” And then Ivan and Lily sat together and decided “music quiz”, trying to guess the style, the era and even the room. Lily is well versed in the theory, Ivan – the practical side. Wrote and received.

Came for Lily and her roommates some software on the computer to install and I was fed soup. Such a barter. Sometimes knocking at the door: “would you like something to deliver? And that is very desirable,” laughs Ivan.

Classmates hinted: “Vanya, look on Lily’s attention,” and he resisted: “what do you mean? She’s so principled.” And once, when a neighbor of Lily left, they were sitting in a room, drinking herbal tea and talking until six in the morning. Another time – in the room Ivan – guitar recalled children’s songs. The administrator of the floor whispered: “You be quiet!”. From the moment together preparing for the exams, studied, absorbed in the metro. It turned out that music tastes are the same – a classic of the Baroque era, the rock, the only difference is electronic music.

Photo from the personal archive Chernevich

– Worked, worked and worked, in General – laugh Chereneva.

Five years received their diplomas, got married, found a job. Ivan became a sound engineer for radio national society for the blind, Lily – Professor of computer arrangements and “non-visual accessibility for touch devices,” in cultural and sports rehabilitation complex VOS.

Collected all his savings, took out two loans. One pulled themselves, with others helping parents. Bought a room in the room in the suburban Friazino. Realtor in getting acquainted with the neighbors two times out of ten apartments had heard the refusal, and Serenely think it’s a good indicator: in their opinion, the fear that people with special needs can be unadapted justified.

Went to work by three modes of transport – by train, metro, bus, 2.5 hours one way. And so for three years. By the time they have dreamed of, “I wish Sonya to invent” and at the same time to move closer to Moscow – “to avoid the effect of complete exhaustion. Just arrived at work and already tired,” explains Ivan. – Radio irregular schedule, the broadcasts often ended in 22. Came home at 00:30 and at 7 am rise.”

Today while Lily is caring for Sonja, Ivan spends on the road an hour and 15 minutes from door to door. Says: “Another quality of life”. However, the time increases: the desire to help enough of Ivan and pulls from familiar landmarks.

– Someone thinks that I’m dangerous coming, pulling to the side, and you’re a little disorientates. Discomfort, of course, you as a thing taken, although the purpose seems noble. The only people not interested in need such assistance. But we try not to be angry, and to explain. But after such cases say, “Well then… hurt me good, and as a result I’m a little late.”

The child will get dirty, and someone will report to the guardianship

Kitchen Chernevich large, bright – looking for this specifically to bring guests. Sunny Saturday morning Lily made pancakes, serve the condensed milk, candy and raspberry jam. A plate of diced cucumber – especially for Sony. “That’s her thing – explains Lily. – She only eats cucumber”.

Sonia also stretches to pancakes.

– Where is the mouth? – smiles at her Lily.

– Blueprint! – ironically Ivan. – Oh, you’re on the table you want to climb!

Stopped in a rush to get to the table, Sonya grabs his spoon and, while Lily stir the porridge begins to Bang on this mug is waiting for lunch.

– First, waiting for the first step, and then think “How good it was when the baby was lying,” jokes Lily.

– When was colic and teething, Sonia was awake, screaming. Tried rocking, walking with her around the room with a guitar tried to sing, – says Ivan. – But in those moments we feel handicapped, especially when started cramping. The baby is crying and you can’t do anything.

But we wanted a child – still a Lily. And, of course, were the fears: what if I fail, but I think it is not related to a disability. Tried to find out, read the articles. Communicated with blind friends who have babies. Asked, for example, how to find a child on the Playground. There is such a device, one half of which is hung on the child and the other parent, and you can click the button and hear the beep, “mom, I’m here.” Or is there a toy with sectors of different colors, touch one of the sectors and hear the name of this color.

That is tried to be prepared morally and financially.

“The story” August 2017 Serenely trying to forget, while the consequences remained, primarily, fear.

– When friends tell you that raising a child can be, and the care and the doctors that it is unnatural and daughter need to take away, I think maybe you overestimate your powers? – Ivan says. And the concern is: that you accidentally do something wrong that would remove the child. For example, time does not notice, how the child will dirty the suit. And so he runs, and some compassionate person will go to the guardianship: “They do not see, we need to understand”.

Any child can fall from the swing, but if we fall, then in the opinion of the people, it is because we are handicapped overlooked. Or if we do show up with a stain on your shirt, you will think that all blind dirty.

And this is the basic braking torque. And while nothing can be done, but we try.

The couple explain that under article 77 of the RF IC “when there is a direct threat to the life or health of the child, the guardianship authority has the right to take it away”, that is, before the hearing. And such cases have been in people with disorders of the musculoskeletal apparatus.

– We don’t want our Sonya put in any receiver. But there is no guarantee that someone will not give a signal. And then gray walls can be considered as unfavorable conditions for the maintenance of the child. There is danger, but it is better not to think – sums up Ivan.

All this year to help young parents come grandmother. One leaves, another arrives – this rotational method. Now away Rimma Yunusovna, mother Lily. Serenely admit that they planned to live without grandparents, but after “the story” still asked for their help – scared. When Sonya goes to kindergarten will be easier, and Ivan and Lily let go of their mothers.

– I remember the first Sonya in the light – with a smile says Ivan. She was 18 days. Easy to carry around in one hand, cane in the other. Full activation of all brain centers. So, here not to stumble, not to hurry. Now we carry Sonia into the sling.

Many ask how we are going to speak with Sonya. But babies in a natural way occurs. And Sonya already knows that grandma can be something to show, and we are not, and she takes our hand and pulls to the right object. No it is never explained. When the sighted children of blind families begin to understand that they have a function that is not available to parents, they often become very caring. Our friends daughter for three years, when the father goes to walk with her, she draws him away from any post.

Once in the train I met a woman, the daughter of blind parents, has become everything to her, and she said that now she for all the increased responsibility.

– Often these children soon begin to talk. Others of our friends son is a year and seven months well-spoken. When he grew up, began to speak: “Dad, look”, and puts the subject in hand, adds Lily.

And we also know a family where the blind only the Pope – continues Ivan. Wife recently told me how came to the kids classmates and they started to play blind. I closed my eyes and walked with a cane around the apartment, trying without sight to navigate. There was another funny incident: one evening the kids went with mom to the store, and was holding a long umbrella. And here are the steep stairs and begin to fumble on the floor. Mom was so surprised, and the children answered: “So it is not visible anything!”. That is, they have no stereotype, as many are blind, lack of sight is a sign of imperfection. The cane is an accessory. Time daddy uses it, why can’t we?

Ivan and Lily are configured, how they joke, to continue the “glorious tradition” and expand the family. The main thing – to allocate resources, and it is not so much about the salary.

– It is important to be aware of the life of this little person and, if anything, to diagnose problems of the psychological plan. And we understand that we have the resources to get involved in the lives of three, why not? – Ivan grins at Lily. And it is in response.

Serenevy have already noticed that Sonya resistant. Once she tried to collect designer – elements are not connected, Sonya dropped them after 30 seconds, again took and tried to make the whole. Did it! And soft toys she, in General, is not particularly interesting – any Teddy bear Sonya prefer a tube or box, and better something. And even understand why.

The room where usually very active Sonya, hardly just “playing”. Here fit a digital piano, guitar, sound engineering supervisor. And sometimes Ivan and Lily allowed her daughter pounding on the keys.

– What do we want to teach Sonya? To start to divide black and white, know what is good and bad. Then that person can be combined, bad and good, – says Ivan.

– I still think that it is important to teach to solve problems, not to get in a stupor, know that from any situation always there is an exit – adds Lily. – Try to see the world, to understand that everyone is different.

And be responsible for their actions.

Yes, Yes. And probably to teach the ability to recognize their mistakes.

This time Sonia takes the handkerchief, hides behind the face, and then peeping.

– I think it will be with humor. A lot of laughs – smiling Ivan.

Three balloons with the words “1 year!”, “Congratulations!”, bought for a birthday Sonia, still holding the chandelier.

Ask friends: “how blindly use a hammer?

One night after the last train, Serenely began to talk about how to explain to Sonya what religion, God, faith. The question “what happened to me this loss of vision? Why is this happening to me and not others?” caught up with them in adolescence. Asked myself and adults, and fortunately, escaped “Terry slendesta” – when a person falls and thinks, “if God let this happen, then he’s guilty and I don’t believe in it”. Closed themselves, not angry at life, and realized: Yes, it happens with vision loss, hands, feet, hearing no one is safe. It is just a feature with pros and cons.

To explain my thought about the pros, Ivan offers to imagine yourself in a dark room “situation, when not working one of the analyzers, which people use most of the time”.

To live without a vision is a way of life. Less distracted by advertising, it is not so much exposed to the mood of the image. “That’s fucking depressing, the rain on the street”. And we have no visuals, therefore do not strain the walls dark or cloudy weather.

Even though some blind people think that this is not life, but if the vision is life. But this setting prevents you cease to live with what is, and begin to live some fantasies. We even had a friend whose parents didn’t say he was blind: thought it would help him not to feel defective. And often such people consider themselves disabled, as it is accepted in society, and then they suffer from the stereotype, not the situation.

And people without a vision more time to think, and what we are living for? what is the universe? something to think vision is more complicated. Someone becomes a “walking Wikipedia”, someone goes entirely to the profession, – says Ivan. – And I also see people on the other side. People have learned to master their facial expressions, and to manage the voice of a man is not able perfectly, and using the voice us blind, we receive a lot of information about the person.

After meeting with Ivan and Lily think that blind is easier not to make the wrong person with whom to go through life. And love in such pairs is on something deeper and more solid than the appearance.

– We have our own troubles, is that people may like the voice, but such cases are less. Don’t know any of the history that people created a family, and then realized that they were wrong.

Photo from the personal archive Chernevich

And I can understand what you’ve achieved something, adds Lily. We know people who, having the vision, to what do not aspire, even in everyday terms. Someone who lives off parents and believes that this is normal.

Serenely grateful to my parents who had the wisdom not to make them home “dolls”. Lily after the second grade came home and happily suggested, “Mom, I’ll wash the floors!”. Peeling potatoes, gathering all the bumps in the street. Ivan remembers how he worked in the garden, and then I get home, along with her sister were tied to the horizontal bar belt from my mom’s Bathrobe and was once dokatalsya before that broke and flew into the corridor. Says it’s fun, otherwise the child would be lost. Sorry Ivan that his father explained to him how to use a hammer.

– Now watching videos on YouTube, asked friends: “how blindly use a hammer?”. Sounds scary, but it’s generally not a problem.

The wall in the kitchen Ivan set independently.

Serenely upset and angry if the media is going to do pitiful image of their family. For example, begin to ask, how they lived, when there was free travel on public transport or why not the benefits of the mortgage and the help of a social worker. Explain that to show the overcoming is not bad, but it is always mixed with a pity tone “poor-poor don’t give up”, not enough positive.

– We must understand theoretically that the lack of sight is no reason to be sorry. When everything hurts, of course bad, but the lack of vision is not pain. It’s just inconvenient but not a reason to be upset – says Ivan.

– The integrity of our body fundamentally changes nothing. You are also able to do something, just less advantage in the same profession, but more in another.

That night, thinking about God, life and fate, Serenely once said: “their task – with these circumstances to live not only with dignity, but more than worthy, fulfilled and overfulfilled the plan”.

– I think that Sony life will be more fun – smiling Ivan. – We will give your experience and she can use it in the sighted world. And she will have more opportunities to progress. There is a thought: if he will not understand why you came to earth, then make sure your children were closer to the answer to this question.

On the weekends, when my grandmother Rimma goes to Sonia for a walk, games room into a radio Studio. Ivan and Lily put pelicci and record a podcast – the audio journal “Dialogue” all-Russian society for the blind suggested that they lead the category for young parents. The theme of the latest issue – preparing for the hospital.

Text: Nadezhda Prokhorova

Photo: Sergey Shedrin

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